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Post by Former NIMH Director Thomas Insel: Citizen Science

By Thomas Insel on April 26, 2012

Meredith, a 15-year-old high school student from San Diego, wrote this year’s breakthrough paper on modeling global epidemics. An 11-year-old boy from upstate New York solved a problem in protein folding using a computer game called Foldit. And an octogenarian working with his retired physician partner created the Cinderella Therapeutics Foundation in Holland to launch rapid trials of drugs rescued from industry.

These are a few of the stories from the Sage Bionetworks Commons Congress in San Francisco this weekend, supported by Google and the Kauffman Foundation for Entrepreneurship. The Congress brought together a motley crew of computer geeks, bioinformatics scientists, genomics gurus, and patient advocates for two days of non-stop brainstorming about how to use innovation to empower patients.

You might not expect that a meeting with talks on managing “big data” or “open source tools” would be edgy or passionate. In fact, this Congress could have been called Occupy Science. We heard about new tools to give patients ownership of their medical information and research subjects ownership of their informed consent. We heard about projects to share research data broadly and publish research results freely. And we heard from patients who had to create their own clinical trials and their own organizations to get answers.

Beyond the passion—and there was a lot of passion at this meeting—the Congress captured an emerging trend. Just as technology has democratized communication, it is transforming science or, more accurately, the culture of science. Academic science has been based on a model of individual achievement, where success is defined by what and where a scientist publishes. While this system has worked spectacularly well in some areas, the success of “big science” like the Human Genome Project has demonstrated the power of large, collaborative teams. Recent technologies have actually created a new space in between the small lab and big science models. Powerful, affordable sequencing and computational tools have “democratized” much of what used to be done only in big science teams, empowering individual labs or even non-scientists to contribute in big ways.

Technology has created opportunity—that’s hardly news. The gist of this meeting was not about technology but about changing the culture to accelerate progress on targeted treatments for cancer or reducing mortality from mental illness. How do we change the culture? The Occupy argument makes three claims. First, innovation will come from collaboration between scientists, clinicians, and patients, with patients recognized as the experts and given control over the use of their data. As Kathy Giusti of the Multiple Myeloma Research Foundation said it, “power to the patient.” Second, taxpayer funded research must be accessible to taxpayers or, as Heather Joseph of the Scholarly Publishing and Academic Resources Coalition said, “set the default to open.” And third, the barriers to treatment development will be overcome by new precompetitive partnerships: collaborations with open sharing of data between industry, academia, and government. This would be nothing less than a revolution in how science progresses, driven by projects like the oddly named Arch2POCM.

We don’t know if this revolution will succeed, if success is measured by better diagnostics and therapeutics. But I can say this with certainty: what we are doing now has not delivered as quickly or as completely as most of us want. Of course, the problems are complex and often we don’t know enough to translate a scientific discovery into a breakthrough for health. Technology cannot fix this, but technology can alter the culture of science just as it has altered the culture of communication. Empowering the public, making data public, and creating models for open innovation are all experiments worth running. Time matters. The message from the Sage Bionetworks Commons Congress is that we can begin to change the culture of science right now.